Practice Concepts. Benefit-Finding Intervention for Alzheimer Caregivers: Conceptual Framework, Implementation Issues, and Preliminary Efficacy

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1 Practice Concepts Suzanne Meeks, PhD, Editor The Gerontologist The Author Published by Oxford University Press on behalf of The Gerontological Society of America. Cite journal as: The Gerontologist Vol. 54, No. 6, All rights reserved. For permissions, please /geront/gnu018 Advance Access publication March 31, 2014 Benefit-Finding Intervention for Alzheimer Caregivers: Conceptual Framework, Implementation Issues, and Preliminary Efficacy Sheung-Tak Cheng, PhD,*,1 Rosanna W. L. Lau, BSocSc, 1 Emily P. M. Mak, BSocSc, 1 Natalie S. S. Ng, BSocSc, 1 and Linda C. W. Lam, MD 2 1 Department of Health and Physical Education, Hong Kong Institute of Education, Tai Po, N.T. 2 Department of Psychiatry, Chinese University of Hong Kong, Shatin, N.T. *Address correspondence to Sheung-Tak Cheng, PhD, Department of Psychological Studies, Hong Kong Institute of Education, 10 Lo Ping Road, Tai Po, N.T., Hong Kong. takcheng@ied.edu.hk Received September ; Accepted February Decision Editor: Suzanne Meeks, PhD Purpose: To describe an intervention promoting benefit-finding in Alzheimer caregivers, to discuss key issues in implementation and ways to resolve them, and to examine whether the intervention reduced burden and depression in a small randomized trial. Design and Methods: Twentyfive caregivers were randomized into benefit-finding and psychoeducation groups. Both groups had eight weekly sessions. Outcome measures including role overload, Zarit Burden Interview, and Hamilton depression scale were collected at baseline and after treatment. Results were analyzed using analysis of covariance. Additionally, the challenges of implementing such interventions, some of which related to cultural issues, were analyzed qualitatively. Results: Controlling for pretest, the benefit-finding group had lower depression than the psychoeducation group at post-test, despite the fact that some caregivers found benefit-finding challenging. The two groups did not differ on overload and burden. However, within-group analysis suggested that both groups showed significant reductions in overload from pretest to post-test. In addition, we discussed participants difficulties in grasping the technique of thought modification for benefit-finding, recording such exercises at home, and sharing their thoughts and experiences in groups. We described measures undertaken in the main trial to overcome these issues. Implications: Cognitive approaches focusing on benefit-finding are feasible among Chinese caregivers, with preliminary evidence suggesting an effect on alleviating depression. Key Words: Alzheimer s disease, Positive aspects of caregiving, Caregiver burden, Randomized controlled trial, Hong Kong Chinese Caring for a family member with Alzheimer s disease (AD) is a chronically stressful experience. The round-the-clock nature of caregiving Vol. 54, No. 6,

2 often leads to physical and emotional exhaustion, health problems, depression, cardiovascular diseases, sleep disturbances, and even early mortality (Aneshensel, Pearlin, Mullan, Zarit, & Whitlatch, 1995; Mausbach, Patterson, Rabinowitz, Grant, & Schulz, 2007; Vitaliano, Zhang, & Scanlan, 2003). They are often called an invisible group because they are mostly outside of the formal health care and social service system. They carry the major burden of day-to-day care of relatives with AD with little assistance from the formal service sector. This is especially true for most developing countries in which the kinship network is the main provider of care and support from formal services is generally lacking (World Health Organization, 2012). Even when services are available, caregivers may not utilize them because they think it is their responsibility to provide care for their loved ones (Brodaty, Thomson, Thompson, & Fine, 2005), especially when doing so is endorsed by cultural values (Knight & Sayegh, 2010). There has been much research on interventions to help family caregivers. In general, approaches to intervention fall along these lines: providing information, problem solving (e.g., managing behavioral problems, environmental modification), increasing enjoyable activities, thought modification, social support, and family counseling (Belle et al., 2006; Gallagher-Thompson et al., 2012; Mittelman, 2013; Wisniewski et al., 2003; Zarit & Leitsch, 2001). Other than family counseling which cannot be easily classified, these approaches tend to focus on managing and modifying the negative and stressful aspects of the caregiving experience. Of particular relevance to this study are cognitive behavioral interventions (Au et al., 2010; Coon, Thompson, Steffen, Sorocco, & Gallagher-Thompson, 2003; Gallagher-Thompson & Steffen, 1994; Losada, Márquez-González, & Romero-Moreno, 2011; Márquez-González, Losada, Izal, Pérez-Rojo, & Montorio, 2007). Based on cognitive behavioral principles, this line of intervention focuses on identifying dysfunctional thoughts in caregivers (e.g., I should dedicate myself entirely to the care of the ill relative) and changing them. One review found this type of intervention to be most effective among all psychosocial interventions for reducing emotional distress and depression in caregivers but that conclusion was based on a sample of three studies employing cognitive behavioral approaches only (Gallagher-Thompson & Coon, 2007). Another review commented that such approaches are generally rare in developing countries due to the lack of resources and cognitive behavioral therapy specialists (Gallagher-Thompson et al., 2012). For instance, in a replication and adaptation of the Stanford program in Hong Kong (Au et al., 2010), master-level clinical psychology trainees were used but there were only 20 such trainees per cohort in the entire Hong Kong at the time. This 13-session program was evaluated against a waitlist control in a randomized trial and was found to enhance self-efficacy in managing disruptive behaviors and in controlling upsetting thoughts as well as promote the use of rational problem solving and resigned distancing. However, of the 37 caregivers recruited in this study, six treatment and four waitlist control (i.e., 27%) dropped out and it was not clear why. Compared with the more traditional focus on modifying dysfunctional thoughts, studies that focus on cognitive restructuring techniques as a means to help dementia caregivers reframe negative experiences in positive terms are relatively rare. In the following, we describe such an intervention developed for Chinese caregivers, followed by a report on preliminary data from the pilot study, issues of implementation revealed in the pilot, and changes made to address the issues in the main trial. Outcome evaluation of the main trial, which is still ongoing, will be reported in subsequent papers. A Benefit-Finding Intervention for Alzheimer Caregivers Conceptual Framework Research has demonstrated that positive gains (a.k.a. positive aspects or benefits of caregiving) are common experiences among caregivers, often existing side by side with negative experiences such as hassles (Cheng, Lam, Kwok, Ng, & Fung, 2013a; Kinney & Stephens, 1989), as when caregivers find benefits while dealing with day-to-day care tasks at the same time. This should not be surprising as the stress of caregiving is continuous and cannot be categorically resolved (especially when symptom manifestation changes) unless the patient deceases. However, the situation gives rise to a possibility in which the balance between gains and burden can be shifted toward the former through positive reappraisal. In the classic two-factor model of caregiving appraisal (Lawton, Moss, Kleban, Glicksman, & Rovine, 1991), caregiver burden is postulated to be 1050 The Gerontologist

3 determined in part by the way caregivers construe the demands of caregiving; a negative appraisal leads to an increased sense of burden, whereas a positive appraisal leads to positive outcomes such as subjective well-being. After working with human immunodeficiency virus caregivers, Folkman (1997) noted that caregivers reported positive cognitions and emotions as often as negative ones. By way of positive reappraisal as well as other means such as spiritual beliefs and practice, caregivers benefit from positive meanings, emotions, and self-esteem that help them get through the day. Positive reappraisal, a form of emotion-focused coping, is especially relevant when dealing with intractable stressors for which problem-focused coping is unlikely to be very helpful (Lazarus & Folkman, 1984). Although the relevance of positive reappraisal or cognitive restructuring is widely recognized, we are aware of only one intervention study that specifically trained caregivers to use cognitive restructuring for positive gains (Hébert et al., 2003; Lavoie et al., 2005; Lévesque et al., 2002). In this 15-session group-based intervention, other than information provision, problem solving, and promoting social support, caregivers were taught four kinds of cognitive restructuring techniques, namely attributing symptoms including behavior problems to pathology, identifying and changing dysfunctional thoughts, identifying gratifications in caregiving, and focusing on and accepting the realities of decline and loss. However, when compared with a support group as control, this intervention did not relieve global caregiver burden, although less behavioral problems and reactions to them were reported by the intervention group immediately after treatment (Hébert et al., 2003). In an interesting process evaluation study by the research team (Lavoie et al., 2005), participants were asked to describe what they had learned and in what way the intervention led to improvements in their situations. The majority of the intervention participants (22 out of 30, or 73%) found cognitive restructuring to be most useful and these individuals had the largest treatment gains. Forty percent mentioned seeking social support as a learning but those who sought support tended to receive decreased support (especially emotional support), rather than increased support, from family and service providers. Few participants found problem solving to be relevant or were able to recall the steps involved (e.g., dissecting the problem, generating alternative solutions, analyzing pros and cons of different solutions). Thus, caregivers see cognitive restructuring techniques to be most relevant. More comments on the participants feedback on the use of cognitive restructuring are warranted. Most participants mentioned that they were able to change the way they think about the situation, most notably in terms of recognizing the inevitability of decline and concomitant behavior problems as well as correcting certain dysfunctional thoughts such as those related to self-blame. Some commented that the former was a result of the educational component, which helped them understand the disease, rather than active efforts at reframing. However, only one participant learned to view her role as an opportunity for personal development (Lavoie et al., 2005, p. 29); no other support for the gratitude component was noted. In a recent editorial, Zarit (2012) commented that research is needed to unravel whether positive aspects of caregiving reflect stable appraisal styles that some people bring to the care situation, or if positive appraisals can be enhanced through carefully targeted interventions (p. 673). The reasons for the negative results in this respect in Lavoie and colleagues (2005) study are not clear. One possibility was that the caregivers were taught too many cognitive techniques and it was not easy for them to integrate all the techniques learned and apply them simultaneously and integratively in daily encounters. In view also of the fact that many spousal caregivers in Hong Kong had had little or no education due to historical reasons such as war (Cheng, Lum, Lam, & Fung, 2013), which may limit their ability to learn from a complicated intervention, we have designed a benefit-finding intervention that presents relevant cognitive skills in a simpler and more focused fashion. Using a simple diagram of the thought-emotion-behavior triangle, we focused simply on helping caregivers understand the interconnectedness of the three domains, and how modifying thoughts could improve emotional well-being either directly or through behavioral change (the thought-emotion-behavior triangle was actually drawn as a circular diagram but we will keep referring to it as the triangle as it is a well-known term). This aspect had the primary goal of fostering cognitive restructuring techniques for the purpose of benefit-finding. A caveat to note is that we did not emphasize so much on challenging dysfunctional thoughts because calling certain thoughts dysfunctional might induce caregivers to think that they had made mistakes. In light of Chinese tendency to hold back their concerns in Vol. 54, No. 6,

4 front of others (see below), such an approach might further discourage self-disclosure in the group. We simply asked caregivers to try replacing an old thought with a new one. Program Design In a review of international programs to assist caregivers, Gallagher-Thompson and colleagues (2012) commented that resource (including expertise) and cost are crucial issues in developing countries. Interventions employing cognitive behavioral approaches had typically used professionals, such as clinical psychologists, as trainers (Au et al., 2010; Coon et al., 2003; Gallagher-Thompson & Steffen, 1994; Losada et al., 2011; Márquez- González et al., 2007). However, such specialists are rarely found in many developing countries including Hong Kong. Hence we had designed an intervention that could be conducted by paraprofessionals. Eventually we would target former caregivers as trainers as we see this to be the most promising direction. In this particular study, trainers were psychology graduates who had experience working with dementia caregivers and were trained and supervised by the first author who is a clinical geropsychologist. The benefit-finding intervention combines standard psychoeducation (information and problem solving) with positive reappraisal coping that is intended to help caregivers construe the demands of caregiving in more positive ways. The name does not imply that the intervention does nothing else except benefit-finding; the intervention was so labeled in order to highlight its distinctive aspect and to propagate the message about enhancing positive aspects of caregiving. Topics covered included knowledge of dementia, communication skills, stress management and relaxation, balance between self-care and caregiving responsibilities, social support, managing behavioral and psychological symptoms, home-based activities for care recipient, personal care skills for dependencies in activities of daily living (ADL), home environmental modification, and community resources. On top of these, caregivers discussed the thought-emotion-behavior triangle and thought modification. In this context, they first identified their emotional reactions to different caregiving situations and started to practice positive reappraisal using personal examples as well as hypothetical examples in the training manual. Caregivers who were known to have an especially positive mindset toward their caregiving experiences were asked to record videos in which they recounted the challenges of being a caregiver and how they were overcome, partly through positive reappraisal. Three videos were produced, each featuring a spouse, a child, and a child-in-law caregiver, respectively (all happened to be women), which were shown in different sessions (with written consent) because it was thought that sharing by caregivers would be much more powerful than coaching by a trainer (the videos were not available in the pilot phase; see section on Issues of Implementation and Subsequent Changes to Program). Additionally, participants voice-recorded diaries in the evening up to three times a week to reflect on positive experiences that day (no specific times in the evening were given as it was unrealistic to specify such times for caregivers). We asked that they voice-recorded the diaries because some caregivers were illiterate. Such diaries, together with reappraisal exercises within the sessions, formed the basis for mutual sharing of benefits as well as the process by which the benefits were derived. Through mutual sharing in groups, caregivers served as role models of benefit-finding for each other. Aside from initial coverage of information about dementia and basic communication and stress management skills, contents related to benefit-finding were included throughout, covering as much as one fifth of the total contact time (diaries not included) in the pilot phase and increasing to one third in the main trial. For example, when discussing coping with behavior problems or ADL dependencies, positive reappraisal was practiced and was given extra attention as a way of coping. To illustrate, instead of focusing on their worries about the relative s wandering behavior and to get annoyed when it happens, the participants were encouraged to change their mindset, such as (a) treating it as a moment together and walking with the relative rather than preventing him or her from doing it, (b) cherishing the memories when visiting old places, (c) using the opportunity (child caregivers only) to reflect on what the parent had done for them when they were young (e.g., taking them here and there), (d) appreciating nature when walking in parks, (e) treating it as a physical exercise for relative and self, and so on. At the last session, besides reviewing things learned including the positive gains they had acquired, participants reflected on their motivations to provide care and reaffirmed their caregiving role and relationship with the care recipient. They also set goals for improvement in the coming year. In 1052 The Gerontologist

5 the following, we present preliminary data on the efficacy of the benefit-finding intervention and summarize a few key observations from the pilot phase and what were done to tackle them in the main trial. Preliminary Data on Treatment Efficacy We are in the process of running a double-blind randomized controlled trial to evaluate the benefit-finding intervention against two active controls: (a) a standard psychoeducational intervention (same topical coverage as in the benefit-finding intervention but without the positive reappraisal component) and (b) a simplified psychoeducational intervention which is plain information provision without hands-on exercises on skills application or rehearsal. The latter is representative of interventions in the local context which tend to be brief and education focused (hence treatment-as-usual), whereas the former resembles similar interventions reported in the mainstream international literature. Further details about the characteristics of the control groups can be found in Cheng and colleagues (2012). Although the main trial is still ongoing, we report below results from the pilot study so that preliminary efficacy of the benefit-finding intervention can be discerned. In the pilot, only the benefitfinding and the traditional psychoeducation were attempted because the simplified psychoeducation was simply a watered down version of the latter and because of recruitment concern. Other than known barriers to recruiting caregivers such as the lack of time, exhaustion, and unwillingness to leave the relative to the care of someone in order to attend intervention, the lack of screening and diagnostic services in developing societies such as Hong Kong means that family members and even community agencies are often uncertain about the cognitive status of the patient and uninformed of the diagnosis. Because of these difficulties, we designed a smaller scale pilot to avoid drawing too many potential participants from the main trial. Twenty-six caregivers, recruited from psychiatric clinics and seniors centers, were randomized by clinic/center to benefit-finding (n = 14) or psychoeducation (n = 12) group, with two clinics/ centers in each group. However, one participant from the benefit-finding group dropped out, leaving 13 in this group. Sociodemographic characteristics of the sample can be found in Table 1 and there was no significant difference on any of these variables between groups (detailed statistics are available from the first author). Inclusion criteria were: (a) primary caregivers of a relative aged 65+ who had a physician diagnosis of AD or met the National Institute of Neurological and Communicative Disorders and Stroke Alzheimer s Disease and Related Disorders Association criteria for possible AD (McKhann et al., 1984); (b) providing no less than 14 hr of care per week; (c) care recipient being in mild to moderate stages of AD as determined by Clinical Dementia Rating (Morris, 1993), (d) caregiver aged 18+ years, (e) caregiver without cognitive impairment as measured by the Cantonese version of the Mini-Mental State Examination (Chiu, Lee, Chung, & Kwong, 1994; Folstein, Folstein, & McHugh, 1975), and (f) caregiver at least mildly depressed, operationalized as a score of 3 on the Hamilton Depression Rating scale (Hamilton, 1960). Although the conventional cutoff score is 8, it was not empirically established and many researchers consider it too high (Möller, 2008). Two studies by Zimmerman and colleagues (Zimmerman, Posternak, & Chelminski, 2005; Zimmerman et al., 2012), each having about 300 Table 1. Sample Characteristics Benefit-finding Psychoeducation Age (M/SD) 54.2 / / 10.8 Sex (women %) Married (%) Education (%) Primary or below Secondary Tertiary 0 33 Relationship to care recipient (%) Spouse 23 8 Child Daughter-in-law/ 8 17 niece Living with care recipient (%) Dementia severity of care recipient (%) Mild Moderate Zarit burden (M/SD) Pretest / / 9.35 Post-test / / Role overload (M/SD) Pretest / / 2.17 Post-test 9.77 / / 2.34 Depressive symptoms (M/SD) Pretest 7.54 / / 4.01 Post-test 3.46 / / 5.46 Vol. 54, No. 6,

6 depressed patients, converged to an optimal cutoff of 3, based on criteria for remission, psychosocial functioning, and quality of life. We therefore adopted this as our criterion. Exclusion criteria were the care recipient having parkinsonism or other forms of dementia (e.g., mixed cases). The groups met weekly for 2 hr and were led by a trainer. Standardizing exposure (or dosage) has the advantage of providing additional controls (such as for expectancy effects) when analyzing outcomes, although it may mean reduced time for certain topics in the benefit-finding group in order to make room for positive reappraisal training. Ethics approval for the study was obtained from the Joint Chinese University of Hong Kong-New Territories East Cluster Clinical Research Ethics Committee and the Central Research Committee of the Hong Kong Institute of Education. Outcomes measures for the pilot study were burden and depression. Burden was measured by Pearlin, Mullan, Semple, and Skaff s (1990) 4-item measure of role overload (rated on a 4-point scale of 1 = not at all to 4 = completely) and the 22-item Zarit Burden Interview (rated on a 5-point scale of 0 = not at all to 4 = extremely; Zarit, Reever, & Bach-Peterson, 1980). Depression was measured by the 17-item Hamilton Depression Rating scale (Hamilton, 1960). These three scales have all been translated into Chinese, with alpha coefficients equaling 0.78, 0.86, and 0.84, respectively, in a larger Chinese caregiver sample (Cheng et al., 2013a). The measures were obtained at baseline and again approximately eight weeks later after treatment. Gallagher-Thompson and Coon s (2007) review suggested a rather large average effect size (d = 1.20) for cognitive behavioral approaches. We hypothesized better outcomes among benefitfinding than among psychoeducation participants and assumed a similar effect size, f = 0.50 (equivalent to d = 1.00). According to GPower 3.17, for the present sample size, alpha should be set at 0.10, two tailed, to maintain power at 0.80 in analysis of covariance with one covariate. Pretest and post-test mean scores of the outcome measures are displayed in Table 1. There were no group differences in the pretest scores of role overload, Zarit burden, and depression; t(23)= 0.22, 0.82, and 0.60, respectively, all ps >.41. Analysis of covariance was performed to examine between-group differences in each of the posttest measures, with the respective pretest score as covariate; for instance, when analyzing post-test depressive symptoms, pretest depressive symptoms was the covariate. Results did not reveal any group difference in role overload and Zarit burden, both Fs < 0.2. However, a significant group difference in depressive symptoms was found; F(1,22) = 3.56, p =.073, η p 2 = As one can see from Table 1, the difference was due to substantial reduction in depressive symptoms from pretest to post-test in the benefit-finding group, but not the psychoeducation group. To further illustrate the impacts of the interventions, we performed paired sample t tests comparing group-specific outcome measures between pretest and post-test. For the psychoeducation group, there was significant change in role overload, but not in Zarit burden and depression; t (p values) = 2.15 (.055), 1.18 (.265), and 0.28 (.783), respectively, all dfs = 11. For the benefitfinding group, the corresponding t and p values, with dfs = 12, were 1.99 (.070), 1.29 (.220), and 3.06 (.010). Thus, both groups showed reductions in role overload, but only the benefit-finding group had reduced depressive symptoms, leading to the analysis of covariance results reported above. Issues of Implementation and Subsequent Changes to Program Although the pilot study suggested that the benefit-finding intervention is efficacious in reducing caregiver depression, certain issues of implementation were identified. We describe these issues below as well as modifications made to enhance treatment implementation in the main trial. The discussion below serves to shed light on the challenges of conducting such interventions, especially among Chinese/Asian and low-income caregivers. Understanding the Connections Among Thoughts, Emotions, and Behaviors This important conceptual framework was introduced in week 2, following the initial session in which information on dementia and basic communication skills were introduced. Although the thought-emotion-behavior triangle was not difficult to understand, a few caregivers found it difficult to apply the concepts to reframe a stressful incident in more positive ways. It is generally recognized that cognitive therapeutic approaches, especially brief ones, are more suited for those with better education and intellectual capacities (Key & 1054 The Gerontologist

7 Craske, 2002). However, Hong Kong spousal caregivers tend to have little education due to historical factors; for instance, in one such sample, over one third had no education and half had some primary education only (Cheng, Lam, Kwok, Ng, & Fung, 2013b). In the main trial, more examples were provided to illustrate how certain thoughts could trigger negative emotions and how reframing an event in a positive light could neutralize or reverse the distress. Common everyday examples that were easier to understand were used first, followed by examples relevant to the caregiving context. Exercises were added during initial group sessions to provide opportunities for positive reappraisal practice. Initially, scenarios prepared by the research team were used. After participants became more familiar with the technique, they were encouraged to bring up personally relevant examples and work out reframing using the thought-emotion-behavior triangle and the think-aloud technique. Because caregivers often shared similar experiences, it was not unusual for participants to share similar thoughts at the same time, serving as mutual reinforcement for each other. Engaging in Benefit-Finding To provide a more focused anchor for cognitive restructuring and positive reappraisal, we asked caregivers to think how providing care to a family member has been a rewarding experience, starting from week 3. The concept of benefit-finding itself was difficult for a number of participants who could not contemplate what constitutes a benefit from caregiving, especially for older caregivers with little or no education. To explain the concept to caregivers, we adopted a commonly used Chinese term that is more or less equivalent to the concept of gain in English. We explained to the participants that a benefit or gain represents changes in positive ways as a caregiver. Such positive changes can be seen when one finds new perspectives about the illness and their relatives; develops skills or new attitudes in dealing with the relative; being more able to relax or to avoid emotional upset; acquires insights about one s strengths as well as limits; experiences personal changes for the better, and so on. To reinforce the discussion and to demonstrate that benefits are achievable through changing one s perspectives, the videotaped testimonies from other caregivers aforementioned were added in the main trial. Hearing these testimonies directly from other caregivers was a boost to the participants confidence that they could also find benefits for themselves. Additional exercises were introduced at the training sessions using hypothetical scenarios, in which participants, divided into groups, competed for the largest number of alternative benefits generated. In the second-tolast (seventh) session, participants were asked to review all the benefits they had acquired in order to consolidate their orientation toward positive aspects of caregiving. Mutual Sharing in Group Sessions It has been well documented that Chinese tend to avoid open expression of emotions, especially negative ones. The lack of emotional control is believed to be detrimental to health and to disrupt social harmony (Bond, 1993). Asking caregivers to share emotion-laden experiences with each other and to record such experiences on diaries may be a challenge to some caregivers. Finally, as the traditional Chinese saying don t wash your dirty linen in the public goes, discussion of family problems (such as not getting enough support from other family members; Cheng et al., 2013b) in front of outsiders is discouraged in the Chinese culture due, for example, to the cultural emphasis on family unity and solidarity. One of the reasons of introducing the caregiver videos was to provide role models in sharing personal stories. Nevertheless, a few participants still found it difficult to talk about their personal issues in front of others. As said, open emotional disclosure, especially in relation to family issues, is not a typical Chinese behavior. In the main trial, we dealt with it by setting clearer grounds rules about mutual sharing right from the start and used lots of encouragement throughout. Like in any group, some participants were more outspoken than others initially, but gradually all participated. Most importantly, no caregiver was known to drop out due to the need to share personal experiences. We also noticed that caregivers who were particularly troubled by their relatives disruptive behaviors were more outspoken at the beginning, reflecting their desires to find ways to deal with these behaviors. This was consistent with data elsewhere suggesting that Hong Kong Chinese caregivers are most distressed by overt behavioral problems displayed by their relatives (Cheng, Kwok, & Lam, 2012; Cheng, Lam, & Kwok, 2013). Vol. 54, No. 6,

8 Acceptability of the Diary Exercise In Cantonese, which is the main Chinese dialect in Hong Kong, the spoken and the written languages are somewhat different. If both spoken and written records are used, bias would be introduced when the diaries are subject to linguistic analysis at a later stage. As some of the caregivers were illiterate, we asked all participants to record the diaries on a voice recorder provided by the research team. Some caregivers, however, commented that it felt unnatural to speak to a voice recorder. Other than discomfort with the procedure, the most common obstacle to the diary exercise was the lack of time, especially those who were employed. This was not unexpected given the dayto-day demands of caregiving. Another reason, mentioned by one caregiver, concerned privacy issues and the possibility that the recording might be overheard by the care recipient or other family members who might be disturbed by the content. In Hong Kong, most people live in small or crowded apartment units which may make finding a private space to do the recording difficult. This limitation was not preconceived by the research team. Partly because of these issues, 23% of the caregivers enrolled in the benefit-finding group did not produce any diary, although they would still share their experiences at the group meeting. The remaining benefit-finding participants turned in 8.40 (SD = 5.72) diaries. In the main trial, we gave them opportunities to practice recording recent events during group sessions so that they became more comfortable and familiar with the procedure. Some caregivers who appeared to need more help were allowed more practice before or after sessions. For noncomplying participants, the trainer would phone them on a weekly basis to remind them to do the diaries and bring the recordings back to the next session. Discussion The only major difference between the two interventions was the positive reappraisal and benefit-finding component. Therefore, any difference between the two groups may be attributed to this component. Results showed that the two groups did not differ in terms of burden and overload, but the benefit-finding group had significantly lower depressive symptoms than the psychoeducation group at post-test. A widely cited meta-analysis of psychosocial interventions for dementia caregivers, which included true and quasi-experimental designs, suggested moderate effect sizes on psychological distress but no effect on burden (Brodaty, Green, & Koschera, 2003). As mentioned before, Hébert and colleagues (2003) intervention with specific emphasis on cognitive reframing also had no effect on global burden, although reactions to behavioral problems were subdued, compared with a support group. Our results were consistent with this general pattern of effects reported in the Western literature. Despite being a pilot study, the positive results on relieving depression were encouraging. The negative results on burden need to be qualified. They were characterized by parallel reductions in role overload in the two groups, but no significant change of the Zarit Burden Interview from pretest to post-test. Measures of global burden may not be appropriate outcome measures for all types of intervention studies. For instance, Whitlatch, Zarit, and von Eye (1991) suggested that the Zarit Burden Interview might tap two dimensions, namely personal strain and role strain. The role strain items are similar to Pearlin and colleagues (1990) measure of role overload. The personal strain items tap perceptions of patient dependency and personal responsibility, which are not areas specifically addressed by the interventions. In fact, in a culture emphasizing one s family obligations, caregivers might feel a heightened sense of responsibility to take good care of the relative after going through a training course. Future research should explore whether effects of intervention are not the same for different dimensions of burden. The results on role overload also raised the question of what constitutes an appropriate control group for intervention studies. Many previous studies had used waitlist controls (e.g., Au et al., 2010; Coon et al., 2003; Losada et al., 2011; Márquez-González et al., 2007). However, ideally the control should be a credible placebo (Zarit & Leitsch, 2001). In developing countries where formal support to caregivers and care recipients are lacking (World Health Organization, 2012), a waitlist control may be inappropriate ethically as well as methodologically as there is no usual care available in general. Nevertheless, the psychoeducation group in this study might have been an overly rigorous comparison group, affecting the outcome analysis. Nevertheless, without it, it would not be possible to say for certain that the effect on depression was due to the benefit-finding component per se. In the main trial, a third group, 1056 The Gerontologist

9 namely an information-provision-only version of the psychoeducation group will be included, which may allow more refined analysis of the effects of the different treatment components. Despite the limitations, this study suggests that caregiver interventions are feasible among Chinese caregivers and cognitive approaches with a focus on benefit-finding can alleviate their depression. Unlike the study by Au and colleagues (2010), there was a low dropout rate and caregivers participation and responsiveness suggested that the benefitfinding intervention was acceptable to them. The intervention does not require psychotherapists to serve as trainers, making it more sustainable than imported programs. Such intervention programs are urgently needed as China and Hong Kong will witness a very rapid growth of the dementia population in the next two decades or so (Alzheimer s Disease International, 2013). Research is needed to see whether the present interventions are applicable and effective in actual clinical settings in China as well as other cultural groups. Funding This study was supported by Strategic Public Policy Research Grant No. HKIEd1001-SPPR-08 of the Research Grants Council of Hong Kong. Acknowledgments We thank the medical practitioners, clinics, and NGOs for referring participants to the project. References Alzheimer s Disease International. (2013). The Global Impact of Dementia London: Alzheimer s Disease International. Aneshensel, C. S., Pearlin, L. I., Mullan, J. T., Zarit, S. H., & Whitlatch, C. J. (1995). Profiles in Caregiving: The Unexpected Career. San Diego: Academic Press. Au, A., Li, S., Lee, K., Leung, P., Pan, P. C., Thompson, L., & Gallagher- Thompson, D. (2010). The Coping with Caregiving Group Program for Chinese caregivers of patients with Alzheimer s disease in Hong Kong. Patient Education and Counseling, 78, doi: /j. pec Belle, S. 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